hi all.i was supposed to have an angiogram to find out if this abnormal vein in my head is an avm or not.i chickened out at the last minute because they said i could have a stroke or die? im 28 and felt that it is a big risk to take to FIND OUT if i have anything wrong. what if something went wrong during the angiogram but the vein wasnt a problem?
whats the chances of stroke/death during angiogram? im SO SO scared. thanks
You can minimize the risks if you make sure this is a test your doctor does very often. You can ask how many times he or she has done this in the past year and if there have been complications.
Have you also asked about other ways of checking the vein? There’s something called an MRA–an MRI with contrast dye injected so your blood vessels show, and there’s also a CTA–a cat scan with contrast dye. They aren’t ideal for all cases, but they might work for yours.
Dont be scared Jenny…an MRI is the way to go right now from what I know . I am going through the same thing right now and I know how you feel. The MRI is the safest , non intrusive way to determine whether or not you have an AVM…there is absolutely no risk involved with that test. The angiogram (cerebral) is only going to happen when they confirm that you have an AVM from your MRI. The angiogram will let them know the exact location of the AVM and it’s size. All I can tell you is that is considered a safe procedure providing that you are in good general health. I am not sure what your health status is but you should look up the info on the net to get a better understanding of the steps involved. Hope this helps…stay strong our prayers are with you dear.
It is VERY NORMAL to be highly scared when you are first entering this journey. We were the same way.
Not to minimize the risk, but after going through embolizations and brain surgeries, having a followup angiogram barely rated on our worry meter! As has been mentioned have your work done by the experts in the field–not someone who has watched one being done, once. If your Drs have done hundreds or thousands, and sounds confident, and appears that he/she would go to any length to make sure things turn out the best, go for it.
For legal reasons, they have to tell you all the potential side effects. Heck, just read the warnings on almost any prescription you get anymore; if you worried about getting even some of those side effects, you’d never take any meds.
Doing nothing to find out what is going on carries it’s own risks. One of the things that helped motivate us for treatment was the fact that we could choose our hospitals and doctors if we acted. If we didn’t act, and the AVM ruptured, death or significant side effect are a higher risk, or you are at the mercy of whatever hospital and doctor is on call. We didn’t like those odds, so we opted to plan and act.
Hope this helps, and feel free to continue to post questions or concerns.
Ron, KS
My daughter was 5 when she had her first angiogram. So far she’s had 2 and has another one scheduled in a few months. Her 9 year old sister has also had 2 angios and I had 2 of them 25 years ago. This is a very common procedure and the risks of an undiagnosed AVM FAR outweigh the minimal risk of the angio. My daughter had 3 AVMs that were not seen by the MRI, angiograms are the gold standard.
Life is a risk anyway. Choose what your heart says, but remember to live life its fullness! Don’t allow your fears to disrupt your life. Peace, love and happiness!
Jenny,
An angio sounds scary, but it’s really considered the gold standard for detecting an AVM. My daughter has had a massive brain bleed from a ruptured AVM. She was lucky to survive. A very wise neurologist suggested a year ago that my daughter have an angio. I believe that angio saved my daughter’s life. You have to make the decision that’s best for you. But definitely be aware of the risks and the possible benefits.
Good luck,
Tina White
Jenny, I’m 27 and I understand your fear. Sadly my avm had started to bleed so I didn’t have much of a choice with the angiogram. I’ve since then had another one and am scheduled for one in a few months as a follow up. As someone else said…follow your heart and your mind and go with the decision that gives you the most ultimate peace, but know you’re not alone and we are all here for your support!
Keith
GET THAT ANGIO DONE!!! The risk from having it done is nothing compared to the risk of having an avm bleed. My son’s was fine and he was 3 months old at the time. My 2 angios for my heart went off without a hitch and I was in afib for one and vfib for the other. Just make sure your nuero doctor has lots of experience doing angios of the brain. Ask if MRI might be a better choice. My son’s was mapped using MRI and fixed by angio. My son had bleed after 2nd angio and he all there mentally. Good luck and my prayers are with you.
I promise that the angio sounds a lot scarier than it is. My three year old had one in September. We stayed in the hospital for four hours after, went and took a nap, then he was ready to head to Target for a new toy and The Cheesecake Factory for dinner. The risks of not knowing if you have an AVM and not treating it could be huge.
Jenny, the thought of an angiogram does seem really scary. I had my 4th about a couple of weeks ago and truly, finding out the answer is so important. As others have said, it’s your choice, however, the angio will let the drs know just what is there and honestly, they are experienced at these things.
I know that it’s easy for me to say just have it done, but knowing what is in your head is a great relief. All procedures have risks and the medical people have to tell you the risks…but…not having the angio is a much bigger risk.
God Bless and take care. Let us know how you go.
I’m 25 and I had an MRI that found the AVM.
When I met with my first neuroradiologist he wanted to do an angoi, and I chickened out. I am glad I did because it turns out he wasn’t that good at AVMs, nor was the surgeon he was going to refer me to.
First off make sure the neuroradiologist that will be operating on you KNOWS what they are doing. Second, I don;t know if this will help, but I was awake for the angio so that if I started feeling weird they could stop and prevent the stroke better (sometimes they give you the option of being completely awake or in a twilight state) It also gave me a chance to talk with my Doctor and feel more comfortable with him. The whole procedure doesn’t hurt, it’s a little uncomfortable, and yes it is scary as hell having to sign those forms saying you could be paralyzed, have a stroke or die. I cried the whole time outside the operating room before they took me in. And that was just for the Angio!
I knew mine was an AVM (unruptured) before I had the procedure, but either way, I am younger then you, so I know exactly what you are feeling. More ever I had to have an embolization and craniotomy back to back to remove it and I risked losing my vision and much more, so I totally get the fear. Just talk to the Dr more, and see. Becasue think of it this way. if it IS an AVM and you have a chance to get it before it ruptures you reduce your risk of having any problems down the road.
Hope this helps. Feel free to note me if you need someone to talk to. Since there aren’t too many people in the 20’s on here I don’t think.
Hi Jenny, Hope all of this input is helping you. It is only natural to have a fear of the unknown- we all do. My 6 year old granddaughter was recently diagnosed with AVM by MRA and had her angiogram just yesterday. The procedure went very well - no complications. We will only get final results on size and severity next Tuesday, but at least we will then be able to discuss options and plans of treatment. Take care and remember we are all here for your support. - Cindy
Hi I’m 27 and have had 3 angiograms and 2 embolizations (which are done like an angiogram) so that is 5 times I have had this procedure done. It is scary but the risks are there with anything. For me it was easier to make sure they knew everything about my avm, and how to treat it. I say go for the angio and know for sure what is happening. Best of luck to you…Keep us posted thanks You can do this!!!
An angio is almost nothing in comparison to the potential ticking time bomb in your head, better to have the angio done now than to wait until it blows and any number of things could go wrong. I was also worried before mine because the doctors seemed to really be adamant about telling me about these horrible awful side effects, but I think they have to do that to make sure you know exactly what you’re getting into so you don’t sue them for something, probably. It does seem like they over emphasized the bad while underplaying the good. But it is all up to you, if you are comfortable not knowing or just waiting it out or maybe you have no insurance, these are all factors in your decision. Or better yet, what if they find out that it’s not abnormal and you have nothing else to worry about??
Hi Jenny. Of course, you are scared…that is a completely normal reaction. Many eons ago…I had an massive stroke due to my unknown AVM. At one point they told my family that I had less than 2 hours to live! I would have given just about anything to know in advance that the AVM was in my head before I had a brain hemorrhage. It is a very personal decision to have an angoigram done. However, at least if you had a problem with the procedure…you would be in the hospital where they could do something about it. I was in an airplane on final approach into Miami when I had my AVM bleed! I had only just turned 30 one month before I had my stroke.
Good luck with whatever you decide to do and you will be in my prayers!
Hi Jenny, welcome. I understand your fear, it’s natural too feel that way. If you have the angio. at least you will know for sure what you are dealing with. It will give the doctors more information on how best to treat it if it does turn out to be an AVM. There are complications with just about anything you have done but sometimes the you’ve gotta go through it to get the information you need to go forward. Good luck to you!
I had an angiogram recently, it was easy and hasn’t caused any problems. The worst part for me was the local anaesthetic didn’t work, as I have EDS and often this is the case! So when he went to put the femoral line in i felt it!!! He gave me twice the dose of local and that was fine!
To be honest, I found the whole thing facinating, I watched it all on the screen and saw my brain!!! I saw the dye go in and “light up” the AVM, it was amazing!
After they took the line out they apply a lot of pressure to the site to “seal” it, then you have to stay laying flat for a few hours, I didn’t have any pain or bruising from the femoral line and was walking around 24 hours later.
There are risks with any medical procedure and they have to tell you all the possible side effects, no matter how rare. Every human body and every brain is different, they all react in different ways, but consent forms will always make scary reading.
If you have an AVM you carry the same risks if it’s left… so I would have the scan, then you will know.
wow !! you are ALL so amazing to have replied with helpful advice. Thank you ALL so much.
they never told me that they would give me anything to calm me down??? is that true? i was crying my eyes out and shaking and they didnt offer me anything. they said i must be completely awake.
i do wonder if i have made the right choice…god forbid if anything went wrong later in life i know i would kick myself and wish i done something about it but im just a wimp and scared,facing things is the hardest thing to do!! i thought i was stronger until now !
you have all been so strong and it has put things into perspective for me.
i have a app this fri 10th just to talk things through. i definatly need more inof as they havnt told me much at all. i want to know where exactly this vein is and the size of it etc.
thanks again all. i keep my fingers crossed for ALL of you xxxxx
jenny mattius said:
wow !! you are ALL so amazing to have replied with helpful advice. Thank you ALL so much.
they never told me that they would give me anything to calm me down??? is that true? i was crying my eyes out and shaking and they didnt offer me anything. they said i must be completely awake.
i do wonder if i have made the right choice...god forbid if anything went wrong later in life i know i would kick myself and wish i done something about it but im just a wimp and scared,facing things is the hardest thing to do!! i thought i was stronger until now !
you have all been so strong and it has put things into perspective for me.
i have a app this fri 10th just to talk things through. i definatly need more inof as they havnt told me much at all. i want to know where exactly this vein is and the size of it etc.
thanks again all. i keep my fingers crossed for ALL of you xxxxx
Hi Jenny,
I’ve had a few angios and had to be awake for one of them. I don’t think I’ve ever heard of anyone having one where they had to be awake and didn’t receive the medications to keep them comfortable and help them relax (and my experience was the drugs were very good and did the trick). If I were you I’d double check with them - especially since they failed to talk to you about being drugged for the procedure - that they will indeed be doing that. If not, I’d find out why they can’t sedate you, and depending on the answer, I’d probably ‘demand’ that they give me something.
Even though I don’t consider the angios to be anywhere as bad as I had thought they would be before I ever had one, I still wouldn’t want to have one without some kind of sedation. On the other hand, because my doctors have to have the info that an angio gives them in order for us to proceed the right way, I guess if I had to have one without sedation I would do it.
But don’t let this make you anxious - I’m sure they’re planning to give you the sedation and for whatever reason didn’t mention it - maybe they thought you’d just know that if you had to be awake you’d at least get that, mistakenly assuming that all of us would just figure that out. Who knows, but just check with them and see.
Wishing you the best -
Tori